Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Tuesday, May 18, 1999: Disneyland and a Dream.


Dear Sparky,

Well, I have a lot to talk about but I don't know what to say... if that makes any sense at all.

In the midst of writing this letter my Doctor's office called--one of the new drugs doc prescribed is used specifically in treatment of certain lymphoma's and leukemia's--it's only mildy effective on my disease. So I called the Doc earlier today griping about the side effects and wondering aloud if this was really *worth* it. The office just called back and we ultimately decided that since my other meds weren't helping me at all that this was pretty much our last resort unless I wanted to go back on steroids. Since I detest steroids I decided to at least give this drug a shot.

So that's the "Katie's Health News Of The Day". In other news, my family and I went to Disneyland this past weekend. We left at 2 o'clock in the morning on Saturday to ensure our arrival at 6:30 am. Since we were staying at a Disneyland Resort we had "Early Bird" passes that allowed us entry into the Park at 7:30, an hour and a half before it's actual opening. So we checked in early, got settled in and my brother and I ran to the Monorail station.

We spent a total of 14 hours in Disneyland on Saturday. We had two, one-hour breaks, one in the morning and one in the afternoon that allowed me a bit of napping time. We hit every major ride except for "Big Thunder Mountain Railroad" and the only reason we skipped thunder mountain is because I was being a bitch and I decided that my brother just wasn't going to get his way about that ride.

Have I mentioned yet that I HATE Disneyland? I hate it... I hate rides, I hate lines and I hate pushy mothers who think that because they have a stroller they can mow people down. My favorite part of the day was when I told Johnny (little bro) that I wasn't going to go on any rides for a few hours and that we were just going to walk around and see the sites. There's a lot to see at Disneyland once you stop thinking about running from ride to ride. We wandered through New Orlean's Square and listened to the bands play--the first band we saw was a jazz band complete with piano player, when the horn-players would solo two tap dancers would also solo and it was TONS of fun. I got my picture taken with the two tap dancers and the piano player.

Okay, I'm boring myself. I went to Disneyland, I had a minor amount of fun and I caught beads at Mardi Gras. That's about all there is to say about that...

As I said when I started this letter I don't really know WHAT to talk about--I took the family to see "The Last Session", it was their first time but for some reason I have no desire to discuss that here. It was an incredibly personal experience and I can't express in words how thrilled I am that they finally saw it.

I keep having a particular dream--in the dream is myself and a guy, we are obviously in a relationship of sorts and I'm screaming at him and he's crying. It's actually reminiscent of a fight Trav and I used to have a lot--this guy (I don't know who it is because the dream is incredibly shady) is upset that I won't share everything about my disease with him, that I won't let him comfort me. I reply in a controlled tone that I CAN'T discuss this disease with him because he won't be able to understand--that I could spend hours upon hours of discussion and it still wouldn't be enough to convey the pain this disease has put me through over the past ten years. At this point he starts to tear up a bit and get angry and visibly hurt--he's telling me that he can't understand how we can be in a relationship together and not discuss this at all. He begins to really start to cry and he chokes out the words that he hates to see me go through so much pain when he knows that if I just let him he could be of some comfort to me.

Instead of doing anything caring on my part I just start screaming, I scream so many horrible things... I tell him that he can't comfort me, that NO ONE can comfort me, that if he really cared about me he'd stop torturing me and just let me fight this disease in peace, that if he knew me at ALL he'd know that I can handle this myself and that I don't NEED his help.

The dream slowly fades away at that point... When I wake up I always think about "Going It Alone" (obviously) but more importantly I try to discern why I'm saying such things to a person I love. That's the one thing that really sticks out in the dream--my intense love for him and the knowledge that he feels the same towards me, I don't understand why I can't let him see me cry...

Even though I inevitably cry when I wake up. It's usually the middle of the night and I'm crying all over myself because I just ruined an imaginary relationship for the one-millionth time. I cry because even though I'm awake I can still hear the hurt in his voice and it echoes in a secret place in my head and for just a moment it feels so real.

That's really how I am isn't it? I refuse to let people close to me and I use the past ten years of sickness as a shield. It's saddening, the knowledge that I don't really know how to let people comfort me, that I don't TRUST anyone enough to really comfort me.

Since I've started writing these letters I've been getting emails from people telling me how courageous I am and I'm not, not really. It takes more courage than I have to admit that I need help sometimes, that I can't handle this all on my own. I've never been able to successfully do that, I would rather sit in my room, alone and cry than let someone see me upset.

But on the other hand, I guess writing these letters is my way of learning how to let people in and let people see that the facade of optimism and happiness is my shield against ten years of sickness and pain. Maybe tonight I'll go to sleep and instead of screaming at that guy (who is not only faceless but nameless as well) I'll tell him about how this disease has hurt me and maybe, just maybe, I'll let him comfort me...

Love you lots,

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